Newly diagnosed CLL, full results later today with Hematologist. I was wondering if any of these great options are available in Australia? I am currently working in Brisbane, my home town is Adelaide.
Australian trials ongoing combining Ibrutinib ... - CLL Support
I have active lymph nodes in my neck, groin and head: my lymphocytes count was 20,000 and the oncologist said he thinks my spleen is enlarged. I have has a PET CT scan and bone marrow biopsy (results today) with full new blood work so expecting to need treatment (trying not to pre-empt results but not optimistic of watch and wait.
My hematologists says he thinks I am stage 3 so will require treatment (multiple lymph nodes via PET CT, elevated lymphocytes although not really high (17 x 10 9 )/L, 63% bone marrow colony from samples, low platelets (75 x 10 9)/ L, elevated WBC (20 x 10 9) /L and enlarged spleen. hence combined needs / recommends action.
in Australia it is an Authority required on PBS (Pharmacy Benefits Scheme . $40 per script) states that:
1. The treatment must be the sole PBS-subsidised therapy for this condition (so i get a tick there)
2.The condition must have relapsed or be refractory to at least one prior therapy,
(I miss on this one)
3. Patient must have a WHO performance status of 0 or 1, (so i get a tick there)
4. Patient must be considered unsuitable for treatment or retreatment with a purine analogue (or older so not suitable for Chemo) (I am 53 so I do not qualify unless my FISH says 17p "Evidence of one or more 17p chromosomal deletions")
So my only hope (unless i can see a specialist and get onto a trial of IOV, AOV or IV) is waste time trying something else first (to be fair this may suppress the disease for awhile as seen here by others) but as we see this approach has a reduced likelihood of achieving MDA than the combined targeted therapies are indicating in the trials.
Welcome fellow Adelaideian to this community. If we are going to have CLL, we may as well have it among helpful people.
The first thing I will say is that you may not need treatment right away. You may not need treatment in a few years time. Or you may never need treatment. There are a lot of variables in CLL that you will find out about in time.
The second thing I need to say is that there are plenty of general haematologists in Adelaide, but no CLL specialists. Perhaps Brisbane is much the same. So by all means, let your haematologist monitor your condition, but be cautious about treatment advice. CLL research is moving at an incredible pace, and it is unrealistic for a general haematologist to keep up with the changes as well as all the other blood disorders they deal with.
Keep us posted.........
Hi from another Adelaideian.
I've been on an Ibrutinib + Venetoclax trial for over 2 years now and it's worked fantastically so far. I only got on this by learning all I could through sources such as this forum and going against advice from my SA haematologist who wasn't up to date on all things CLL. I recommend that you do not start any treatment without seeing a top CLL specialist, as seelel suggests.
The best CLL specialist in Australia is Dr Con Tam in Melbourne - he is also up to date on current and proposed trials. If you needed a Dr in SA, Dr Bryone Kuss is worth considering, but I'd still look for a second opinion from Dr Tam before treatment. I don't know about any Qld doctors.
It is unusual to have a PET scan for CLL and a lymphocyte count of 20,000 is not at all high for CLL. Some people can be fine with counts over 500,000! Treatment is based on other factors and most of us waited several years or more before needing to start treatment. We all have active lymph nodes.
If you can, please Google the latest IWCLL guidelines and read these before your appointment. These set out the reasons for treatment and usual approaches. Don't be shy in asking for justification for any departure from these guidelines (I don't mean Drs should never depart from them - there should be a good reason though).
Please let us know how you go before embarking on any treatment - there's a lot of knowledgeable people here who can at least assist you to get the best information and advice from your medical professionals.
You'll find the reference to the iWCLL Guidelines mentioned by Closh in this pinned post: healthunlocked.com/cllsuppo...
Saw my hematologists, we don't have the FISH results yet, maybe late next week, I am 63% spread in my bone marrow so not too bad, feeling a bit annoyed at the lack of combined therapy approval under PBS in Australia for first line treatment. Drugs are approved as mono-therapy under PBS (venetoclax and IMBRUVICA). leading specialists such as Dr Tam (Melbourne CLL specialist) and Dr Bryone Kruss (Adelaide CLL Specialist) recommend combined targeted drug treatments. ( onlinelibrary.wiley.com/doi... ) I think i will chase a specialists review as per the multiple advisers comments here. I really think the combined effort early on has a much better outcome than the single drug PBS approach which is designed to reduce costs not save lives.
In Australia, we are encouraged to provide personal submissions to the PBAC when new drugs are submitted for approval. Submissions from those with experience from overseas trials are also accepted.
I too think that there is a growing body of evidence that the best cost/quality of life outcome will lie with limited treatment time combination targeted therapy for those that don't have the right CLL genetics for FCR. I'm also fairly confident that FCR's days are numbered.
We travel from Brisbane to see Dr Tam however with my wife’s favourable markers Dr Tam does have our recommended first line treatment to be FCR. Understanding it from a cancer doctors point of view (which do see some very poor outcomes in practice) that to undertake 6 months treatment and hopefully done forever...it’s worth considering. We’ll make that call when the time comes and by then hopefully the treatment choice will be much clearer.